Kent and Medway CFS/ME service: our comments 2020

With prescription medicines, warnings are given of possible side-effects of drugs. Yet therapies such as Graded Exercise and Cognitive Behavioural Therapy are not required to have such warnings. Our charity is therefore warning GPs, patients and carers about the possible worsening of M.E. sufferers’ symptoms from Graded Exercise and CBT. In 2019, a patient survey conducted by #ME Action UK www.meaction.net reported that 46% of those who had attended the Maidstone CFS/ME clinic and who had taken part in the survey had been made worse from attending there. In the same survey, 50% of patients who had attended the Gillingham service and who had taken part in the survey also said they were worse for having attended. (For full report see footnote[1]) This is further evidence that Graded Exercise is not safe for M.E. sufferers, therefore contradicting some reports which wrongly declare that it is safe. [2]

The majority of those who’d participated and attended both the Maidstone and Gillingham clinics were of the opinion that both clinics should close and new services rebuilt with patient input.

Since 2015 doctors are now legally obliged to inform patients of risks attached to treatment.[3]

“The doctor is under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it” (1, para 87) (emphasis added)

Therefore a doctor can no longer just inform his patients of the risks based on the views of some researchers, he must inform his patients of all material risks found in allresearch and of alternative treatments.

The above is crucial when it comes to Graded Exercise with M.E. sufferers, as much research has shown that Graded Exercise worsens M.E. symptoms.

Please note that the Kent & Medway CFS/ME service are aware of our following concerns:

Although their most recent website does not mention Graded Exercise Therapy, feedback has shown that this is still part of the programme in addition to Cognitive Behavioural Therapy.

These programmes are based on a behavioural mental health perspective, implying that the ongoing physical symptoms of M.E. are due to de-conditioning and that subsequently, patients are afraid of activity which contributes to their presumed de-conditioning. It also aims to overcome alleged negative thinking of a sufferer, which again is said to contribute to their presumed de-conditioning.

This opinion of M.E. (which is prevalent throughout the UK and beyond) is scientifically incorrect. In addition, from a patient’s perspective, it can be hurtful, degrading and damaging to the sufferer’s health as it is untruthful.

The only ‘medical input’ which the Kent & Medway service seems to perform is a suggestion for pain medication; the GP is still usually the person who ends up prescribing the suggested medicine. The service, though, seems to have an opinion that the M.E. pain is strongly psychological. This, again, goes against scientific evidence.

The CFS/ME service was set up across the country as a result of the CMO’s (Chief Medical Officer’s) report on CFS/ME in 2002. In spite of the Kent & Medway CFS/ME service claiming that their work was achieved through ‘close collaboration’ with patient groups[4], this was not entirely the case. They did work alongside the Sussex and Kent ME/CFS Society. However, objections to the psychological approach of the service were made by representatives of both the 25% M.E. Group (national patient group for severe M.E. sufferers) and the Grace Charity for M.E. (Kent based), at meetings prior to the commencement of the CFS/ME service.

Across the country, the CFS/ME clinics are largely based on a treatment programme of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy). These therapies are supposed to help the alleged de-conditioning idea of M.E. and to retrain patients into overcoming an alleged fear of activity. The therapies of GET and CBT and the premise behind them have been condemned nationally by the following registered charities as treatments for M.E:

The 25% M.E. Group

Invest in M.E.

The Tymes Trust

The Grace Charity for M.E.

as well as many other groups and individuals.

The PACE trial:GET and CBT are also wrongly promoted as a safe treatment from the PACE trial (2011) which has since been shown to be ethically flawed by both science journalists and researchers. [5] Despite this, these therapies are still widely seen as the best treatment for ME with sufferers pressurised to undergo such potentially dangerous programmes.

GET and CBT (which often includes graded exercise) are also condemned as therapies for M.E. sufferers by the following researchers: Dr. Byron Hyde (from Canada)[[6]], Prof. Malcolm Hooper (from England)[[7]] and Dr. Sarah Myhill (from Wales)[[8]]. Also, those serving on the panel for the Canadian M.E. Guidelines, e.g. Dr. Bruce Carruthers (from Canada), Dr. Daniel Peterson (from the USA) and others.[[9]]

Our specific concerns about the Kent and Medway CFS/ME service are as follows:

The attitude to the cause of M.E. The service does not acknowledge an ongoing disease pathology of M.E. but attributes the disease wrongly to de-conditioning.

A worsening of some M.E. patients’ symptoms. As a result of the above, some M.E. patients have worsened in their health due to the advice from the Kent and Medway CFS/ME service. This is especially in regard to the attitude of the service that M.E. patients must ‘push through’ their illness symptoms with activity. (We have had patient feedback verifying this.)

Lack of recorded patient data for those who have not benefitted from the service. There is a lack of written records from the service as to why some patients may have dropped out of the ‘programme’ they started on; also, of how many patients have been made worse by the therapies offered of Graded Exercise and CBT; of those who have refused the psychological therapies there and their reasons why. (This lack of written recording was acknowledged by the service in a meeting held with them and representatives of the Grace Charity for M.E., in February 2012.)

The website of the Kent and Medway CFS/ME service. This is grossly prejudicial towards mental health and has no reflection whatsoever of over 9,000 international papers which demonstrate that M.E. is an organic disorder.[10] In addition, the website states that the service offers ‘medical input’. This appears to only be in the form of advising pain control (which the patient’s G.P. will normally have to prescribe anyway, rather than the service doing so). There doesn’t appear to be any other ‘medical input’ or constructive biomedical investigations for the M.E. patient.

The G.P referral form. The referral form is currently available from your GP. It focuses largely on ‘fatigue’ as the main criteria and indeed as the trigger of the initial illness. FATIGUE IS A SYMPTOM. GENERALLY SPEAKING, AN ILLNESS IS USUALLY IDENTIFIED AFTER A SPECIFIC SCIENTIFIC TRIGGER SUCH AS A VIRUS OR BACTERIUM etc. Most M.E. sufferers report a viral trigger to their illness rather than a vague symptom of fatigue.

We would like more feedback from patients attending these clinics please.

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The referral form excludes those with muscle inflammation and also with neurological signs. By excluding these, a patient with genuine M.E. may actually be excluded from the referral criteria! This is because scientific evidence has shown that M.E. is a neurological illness; it is recorded as such in medical literature, including the classification of M.E. (Myalgic Encephalomyelitis) as a disease of the Central Nervous System by the World Health Organisation.[[11]]

The referral form also says that the diagnosis of M.E./CFS should be reconsidered if muscle pain is the main presenting symptom. Yet, the myalgia in M.E. (Myalgic Encephalomyelitis) means muscle pain!

The form also mentions a possible past psychiatric history for the patient and a mental health worker contact. It also mentions any possible risks to the professionals from the patient. These three sections of the referral form are unnecessary and once again show the mental health prejudice from the Kent and Medway CFS/ME service.

The referral form originally stated that the service was going to treat CFS/M.E., with M.E. meaning Myalgic Encephalomyelitis.[12] However, the form (and website) have now changed the name of the illness from ‘–itis ‘ to CFS/Myalgic Encephalopathy. This excludes recognition of inflammation of the spinal cord. In spite of the name change, Encephalopathy is still listed as a neurological disease by the World Health Organisation[13]; yet, there doesn’t appear to be any approach in treating it this way by the service.

The lack of written references and footnotes/endnotes in the service’s literature to patients. The literature handed out to patients makes sweeping statements which have no scientific backing e.g. ‘Nor does there appear to be any dysfunction of the central nervous system, nor any inflammation of the brain or spinal cord.‘ (Chronic Fatigue Syndrome, Volume 1 Page 5, Kent and Medway CFS/ME Service.) This is one of many written sweeping statements made with no footnotes for scientific references. In contrast, there have been discoveries made of the Central Nervous System for M.E., including spinal inflammation.[14]N.B.:Since we have complained about this mistruth, we have received confirmation from the Kent & Medway Service that their statement denying evidence of inflammation in M.E. patients has been removed from their literature [July 2013].

The lack of a warning of possible side-effects from Graded Exercise and/or CBT. All prescribed medicine in the NHS has a warning regarding possible side-effects. The same should be issued for all prescribed ‘therapies’, especially as M.E. sufferers are often made worse through a Graded Exercise and/or a CBT programme.[15]

Pressure which some M.E. patients are feeling from both the service, some GPs and the DWP (Department of Work and Pensions) that they must comply with what the CFS/ME Service is offering. We would like to remind patients, NHS and DWP staff that M.E. patients are perfectly entitled to either refuse or to drop out of the service’s programme, as supported by the NICE Guidelines. (The Grace Charity for M.E. doesn’t generally support the NICE guidelines but the Kent and Medway service does support them.)

‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.[16]’

The disappointments some sufferers are feeling after being on the waiting list for such a long time, only to find that the biomedical and ‘medical input’ side is so severely lacking once they finally get there.

Some positive reasons which an M.E. sufferer might find should they attend the CFS/ME Kent and Medway service

From patient feedback, some sufferers appear to have benefitted from meeting other M.E. sufferers at the service.

Some patients appear to have benefitted from ‘offloading’ their problems to therapists there and also through advice given as to how they might cope with negative issues in their lives.

What we would like to see at the Kent and Medway CFS/ME service

The Grace Charity for M.E. (and the 25% ME Group and Invest in M.E., both registered national charities) would like to see a biomedical service for M.E. sufferers. This could include blood tests which could help confirm the presence of a viral trigger to the illness and other blood tests confirming poor immunological functioning, e.g. Natural Killer Cell blood test (which is usually low in sufferers). Chronic Orthostatic Intolerance (low blood pressure whilst standing), can be confirmed using a tilt-table method. Brain scans showing poor blood flow to the brain can also help to diagnose M.E. and therefore help with possible treatment. There are other tests that can be done to show what is going wrong in an M.E. sufferer’s body.[17]

We would also like to see the Kent and Medway CFS/ME Service be established away from the mental health site of Maidstone Hospital.

NB:Since The Grace Charity for M.E. expressed particular concerns directly to the Chief Executive at Maidstone Hospital in May 2012, we’ve had one report from a patient that M.E. patients have stopped being told that they must exercise during a flare up of their symptoms. This is good news. We would like to hear from other patients attending the Kent & Medway CFS/ME service about their experiences, and what advice they’re being given there.

Petition

In June 2014, a petition of 57 signatures from Kent M.E. sufferers and their carers was presented to the Executive Medical Director and the Director of Operations of Maidstone Hospital. The petition requested a change to their website, with better wording to protect M.E. patients in the GP and Professional Referrals section. It was felt that the website wording could be a backdoor to unnecessary sectioning of M.E. patients.

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During the above meeting, the following points were established:

An admittance from the Trust that ‘unintentional links’ had occurred with their CFS/ME website, causing unwelcome confusion with the Ambulance Mental Health Referral

The Executive Medical Director is not in favour of an M.E. patient being sectioned just because they have a diagnosis of M.E. She also said that no patient can ever have psychotherapy forced upon them, should the patient choose not to have it.

We have been unable to secure the exact change required by the petition, but it has nevertheless pressurised a change for the better. This change is that GPs now access the referral form without going via the Emergency Mental Health Ambulance page. This had previously been an unnecessary process for a GP to get an M.E. referral form which could have resulted in GPs being tempted to section M.E. patients. By having this change, we are hoping that Kent and Medway M.E. patients are better protected from being sectioned.

(Of course, we are still unhappy about some of the content of the referral form and of CFS/ME being in Mental Health at all, which it shouldn’t be.)

In summary

Since 2012, the Kent & Medway CFS/ME service has done the following in response to sustained campaigning for change:

Removed their statement denying evidence of inflammation in M.E. patients

Stopped telling patients to exercise during a flare up of their symptoms

Decided to send out Questionnaires at 12 month post assessment stages; this is with the hope of capturing patients who have dropped out of the treatment and to ask if they feel worse for CBT/GET

[11] See The World Health Organisation, International Classification of Diseases, Diseases of the Central Nervous System ICD 10- G93.3

[12] Letter to GP practices in Kent, 28th June 2005, from the Kent & Medway CFS/ME service

[13]See The World Health Organisation ICD 10-G93.4

[14] For inflammatory evidence in M.E., see i) What is ME? What is CFS? Information for Clinicians and Lawyers, 2001 by E.P. Marshall, M. Williams, M. Hooper , page 8 which shows 6 references to inflammation of the Central Nervous System in M.E. http://www.margaretwilliams.me/#a2005 ii) Inflammatory changes have been found in the dorsal root ganglia of two M.E. sufferers recently, during autopsies. See One Last Goodbye by Kay Gilderdale, Ebury Press 2011, page 319.

[15] See paper Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon, Irish ME/CFS Association, published in the Bulletin of the IACFS/ME (International Association for CFS/ME) Fall 2011. Also, see the adverse reactions to GET and CBT in the paper Saying No Can Be Positivewww.thegracecharityforme.org/documents

*Although these debates are immensely inspiring, with many MPs truly understanding M.E. at last, the response by Steve Brine (Parliamentary Under-Secretary of State for Health & Social Care) is generally depressing, offering no change to the current situation; he refuses to pass on to NICE the MPs’ request for Graded Exercise to be taken out of NICE guidelines. These debates do show, however, that we now have some excellent MPs on board.